Activities of the ECD Global Alliance
- Host an annual International ECD Patient and Family Gathering
- Host an annual International ECD Medical Symposium
- Collaborate with ECD Care Centers internationally
- Hold regular online chat sessions to allow those affected by ECD to share information and provide mutual support
- Maintain a website dedicated to ECD
- Advocate on behalf of ECD patients to other support organizations, doctors, and lawmakers
- Talk with researchers about ECD and advocate for research into the disease
- Publish a newsletter devoted to stories and information of interest to those affected by ECD
- Engage in social media to increase awareness and provide support via Facebook, Twitter, and Rareconnect
- Provide researchers with a communication mechanism to quickly reach ECD patients
Last updated: June 1, 2017